Many symptoms and still NO answers! HELP!

I'm going to try and make this ong story as short as humanly possible.... After I had my daughter in 1996 I sowly started to develope symptoms... First it started with stiffining in my fingers of both hands, then migraines. Then over the years the pain worsened in my hands and started in my knees, hips, and back. I was and still am CONSTANTLY tired, no matter how much sleep I get. Then over about the ast 6 months, things have seem to have gotten worse. I am now having pains in my wrists, elbows, shoulders, and when I ean my head back my chest bone feels like it pops and it's quite audible. Then when I have 'flare-ups', it seems like every joint in my body hurts, even the arches of my feet! My toes pop and my ankles hurt and burn to the touch. The I recently noticed a rash on my face over my cheeks and nose. I first thought it was from the cold weather, like wind burn, but it never went away. Some days it looks worse than others.It doesn't itch and there is no flaking skin like with dry skin....I'm including some pics to see what you think... I had an appointment with a Rheumatologist and she thinks all of this is Fibromyalgia but I think otherwise. I have a extensive history of arthritis in my family. And not to mention, it seems like I'm getting sick more often now.... I used to NEVER get sick....and with being sick comes bad flare-ups!!!!  The doc did a whole round of tests while I was there.... 6 viales of bood was taken and I had x-rays done from head to toe! I go back this Thursday for the results but the anticipation is really getting to me!!!   Any ideas?

[ireneo]

I'm assuming they're checking your ANA? That will give them an idea if you have some kind of autoimmune disorder. It's just so hard to wait for the test results. My Mom does have fibromyalgia and it sounds similar to your symptoms. But they diagnosed that only after all the other things were ruled out. You mentioned a history of arthritis in your family. Do you know what type?

[swatts831]

My grandmothers side had RA and my dad's has OA.... I've had ANA tests before and they came back very low like 7-9.... but most of the tests came back on the high end of "normal"... I'll find out the results of the latest tests this Thurs....

[krzeaz]

Hi,

Read your info above and hoping that by now (end of April) you have found some answers to your health problems.
You might look at Lyme disease symptoms, to see if you think you might have it.  Lyme can cause unbelievable fatigue, also rashes, and joint pain.

I know the pain of hurting from toes to head when getting up in the a.m.; I was diagnosed with both lupus and Lyme disease.  Hoping to find some solutions for my health issues, too!

[zmombomb]

I've never heard of the facial rash being part of Fibromyalgia.  So, please let us know what the doctor came up with on your lab results.  I was tested for fibro, but didn't have the tender points.  but I do have the sore joints, and the mylar rash on my face.  I was under the impression that the rash is ONLY FOR LUPUS.  I also have Sjogrens.  Hurry and let us know what the doc said!

[swatts831]

Well the doc is treating like Lupus although she wouldn't diagnose it "lupus". Now how crfazy is that? I'm on Plaquenil which is for LUPUS. If i'm being treated for lupus then why won't they diagnose me with Lupus?

[karri144]

Im going through a lot of the same sa you are. I saw a rheumatologist for the first time the other day, he says i have a lot of lupus symptoms but doesnt feel i have lupus because nothing looks swollen. He ran more tests and they took 11 viles of blood! He thinks its most likely fibromyalgia although i did not have any pain when pressure was applied to the ppressure points. i have to go back september 3rd for my results. my an had come back low positive [ 1:80 ] but he ran another one. based on what ive heard it seems like drs just tell you its fibromyalgia when they dont know whats wrong. ive gotten such a run a round with doctors i feel they cant even be trusted anymore. i go through " flareups" so to speak, where the pain i have on a daily basis is ten times as worse. my back/neck/shoulders are always in pain. my elbows wrists knees and ankles hurt and im always tired, no matter how much i sleep.my hands and feet often go numb with only slight color variations. and recently ive developed this headache that just wont go away. i was told to take 800mg ibuprofen but this doesnt touch any of the pain. all of this is starting to cause depression i think because i dont know where to turn. i guess all i can do is wait for my results and take it from there. ive thought about getting a second opinion but im so sick of doctors i cant stand the idea. any suggestions or comments??

[Lauri8967]

Hey all - good to read your posts
To swatt:  It is becoming more and more common for docs to begin treatment before an official Dx.  You probably have alot of symptoms pointing towards lupus, but not enough for an official DX.  Your doc proabably believes that more symptoms or blood work will be more conclusive in the future.  You are actuall very lucky.  This is not done often, adn there are THOUSANDS who have many symptoms, but do not get treated.  I went 8 years without treatment, and I probably wouldnt have even close to the damage I have today caused by the progression of the disease had someone treated me sooner.  The sooner you get treatment - the better, as the meds can slow disease progress.  Just an FYI - plaquenil usually takes up to 5 months to really start working, so you probably wont have relief for your symptoms right away.  Good luck to you, and as I know how frustrating it can be not being Dxd, at least you are being treated - thats more than most can say unfortuanately...
Karri - I also was initially Dxd with fibro, and though I have alot of symptoms of it, I do believe docs labeled me with that becasuse they couldnt figure out what was going on...
Fibromyalgia does not affect ANY bloodwork you may have, so your ANA points to an autoimmune disease (though there are many healthy people in the world who also have a pos ANA).  If I were you, I would get a second opinion if your doc continues to say fibromylgia (fibromyalgia).  Fibro does not cause the sympotms you have (except for fatigue), but lupus does.  Be persistant!!  You know your body....
Good luck to you both...
Lauri

[Lauri8967]

Also, you were zmombomb - fibro does NOT cause rashes OR joint pain.  The pain with fibro - though very intense - is in the muscles and tissue.  Joint pain is seen in lupus patients (or other autoimmune diseases).
Also Karri (sorry!) - You do not have to have swelling to have lupus...It is NOT a requirement for Dx.  SOme patients do have swerlling along with joint pain, but some do not.  Many docs are mistaken about this.  My docs years ago also would not consider lupus because my joints werent swollen.  They said fibro...They did not take me serious until I was swollen....I have learned since then, however, that swelling IS NOT NECESSARY!!  Google the 11 CRITERIA for Dx...
Again - good luck to you both - I hope this helped!!
Lauri

[bruce622]

i know some else had mentioned it in a comment post. I think lyme disease should be looked into. it can mask as so many other diseases,including lupus.if u pursue this; request the [western blot IGG/IGM] it has a 90% accuracy rate for lyme.hope you get the answers u are looking for

[hava]

This will help you in the long run. Start doing it, and report your progress here, so someone else can benefit.
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.If you feel tired or dizzy stop, and resume after 1 minute.Build up your timing slowly and after two weeks at the suggested duration you will start to notice benefits.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for upto 30 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.


Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times
----
Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to master the technique.This is  simplified pranayam for everyone and you do not have to go to classes to learn. This is for life unlike short term classes where you do it in the class then stop when classes are over.  

[swatts831]

After doing some research on Lyme, some of the symptoms do seem to fit. But is it possible that I could have been suffering these symptoms for over 10 years? I went to Lyme.org and looked at some of the symptoms and was quite shocked when I read them. Under the Disseminated Lyme Disease symptoms it listed:

GENERAL
Profound fatigue, severe headache, fever(s), severe muscle aches/pain.

BRAIN
Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities - peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes).

(I have noticed some significant cognitive changes over the years in myself. I also have a slightly droopy eyelid; decreased concentration; noticable problems with numbers; there are days where I can't turn my head; VERY noticable changes in hearing; extreme sensitivity to light and sound; voice seems to come and go some days. )

Other psychiatric manifestations that have been reported in the scientific literature include: panic attacks; disorientation; hallucinations; extreme agitation; impulsive violence, manic, or obsessive behavior; paranoia; schiziphrenic-like states, dementia, and eating disorders. Several patients have committed suicide.

(I was dxd with OCD, anxioty disorder; i have had recent hallucinations; extreme agitation)

EYES
Vision changes, including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision.

(recently my doctor noticed some red spots in my eye, He said they were probably allergies. I've had conjunctivitis 4 times since all this started; and double vision from time to time in the mornings.)

SKIN
Rash not at the bite site (EM) - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull's-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line.

(I get bruises ALL the time and dont know where they come from. I have one right now on my right hip that is a dark purple and have NO clue where it came from.)

Other disseminated skin problems include:


lymphocytoma, which is a benign nodule or tumor, and
acrodermatitis chronica atrophicans (ACA) which is discoloration/degeneration usually of the hands or feet.
HEART and BLOOD VESSELS
Irregular beats, heart block, myocarditis, chest pain, vasculitis.

(I do have irredgular heart beats)

JOINTS
Pain - intermittent or chronic, usually not symmetrical; sometimes swelling; TMJ-like pain in jaw.

(have all of the above)

LIVER
Mild liver function abnormalities.

LUNGS
Difficulty breathing, pneumonia.
(I've had pneumonis twice in the past 2 years!)

MUSCLE
Pain, inflammation, cramps, loss of tone.
(I do get muscle cramps)

STOMACH and INTESTINES
Nausea, vomiting, diarrhea, loss of appetite, anorexia.
(nausea, diarrhea, loss of appetite, but with NO weight loss! Now how crazy is that?!)

SPLEEN
Tenderness, enlargement.

PREGNANCY
Miscarriage, premature birth, stillbirth, and neonatal deaths (rare). Congenital LD has been described in medical literature.
(my pregnancy started with twins and I lost one of the twins at 13 weeks)


So please let me know what you think.....

[swatts831]

Well here's an update for everyone..... Week before last my doctor put me on Lyrica thinking that it would help with the tingling sinsations that I have been experiencing throughout my hands and arms. Problem is, the only thing it's doing is making me sleep and not helping the tingling at all! I've been seeing a PCP for now since I got back on Medicaid since I haven't been able to work and it's been hard as heck to find a Rheumatologist around me that takes Medicaid.... The closest is in New Orleans, which isn't a problem if I could just get them to answer the phone to make the appointment!!!!

So now I'm in the midst of a nice flare-up... and we all know how those are.... hips, knees, legs, ankles, feet, hands, fingers, elbows, shoulders all hurt..... The doc has given me meds for pain but medicaid will only fill generic and they don't work on me so I'm kinda screwed now.... Oh well, I'll live.....

[imsmiley12]

First, I want to stress how important it is for you to stay on your medication!!  My mother died 14 years ago from lupus.  Her condition went undiagnosed for years.  My entire life I remember my mom being "allergic" to the sun.  She had red patches on her face and arms all the time, but the got considerable worse when she was exposed to direct sunlight for very long.  She would also get what she called "funny headaches" which I now know were migraines. (Lucky me, I get them too!)  She had slight arthritis in her hands, but otherwise these are the only symptoms she had up until about 8 months before she passed on.  She had asked docs for years about her "sun allergy" but no one ever had any answers.  What finally lead to her diagnosis was symmetrical lumps in her breasts.  They were in the same spots and the same shapes on each breast.  It still took 5 months to get a diagnosis, even though she was sent to the U of Iowa Hospitals & Clinics.  By they time the started actually treating the disease it had already started to affect her kidneys.  She passed away from kidney failure 'caused by lupus when her first grandchild was 2 1/2 months old.  I was 21 and a new mom, my brothers are 10 & 9 years older than I am.  I can not stress enough how important it is to keep on your meds and report changes to your doctor.  I would hate to see another family torn apart by something that can be controlled.  Swatts, you need to you the doc you are seeing call and make you an appointment with the rheum. doc!  This disease can turn quickly and you need to be monitored correctly.  Good Luck everyone (and sorry for my little rant)
Sue

[swatts831]

Well the lastest update goes a little like this... My PCP ordered a whole bunch of blood work... ANA , Lupus profile, CRP, Sed Rate, etc.... Well needless to say everything came back in the "normal" range except for te CRP and the Sed rate. The CRP normal range was 0.0 - 0.33 and mine was 0.56! The normal range for the sed rate was 0-20 and mine was a 30. The ANA was in the high normal range though.... But apparently according to the blood work, I don't have lupus! So WHY was my rheumy treating me for LUPUS and with a LUPUS MEDICATION if I DON'T have LUPUS????!!!! There was also xrays done on my shoulders, hips and ankles. Seems as though I have calcificatons in the left hip....  My current doc has started me on a low dose of prednisone (10mg per day) and it seems to be working pretty good for now. But for the last two days my hips, hands, shoulders, and knees have been hurting just like usual. I could only imagine what this would feel like if I wasn't on the prednisone! I've been trying to take it easy and take better care of myself too! Not so much stress.... But it just seems to keep creeping up on me!

[karajo]

I'm glad your pcp order all of those test.  Of coarse the sed and CRP being elevated shows inflamation (inflammation).  You could be dealing with arthritis, but please know that the ANA can be deceiving.  I was have a hard time gettinga  dx.  My ANA started out being 160, then it was 640, then it was NEGATIVE.  I was so frustrated.  Then I read on the med help site that you could spend time in the sun before lab would be drawn and, if you had Lupus, it would spike the ANA level.  So I took their advice and my ANA jumped to 2,560.  So a low ANA doesn't necessarily mean that you DON'T have Lupus.  Believe me, none of us want to have Lupus, but I had gotten to the point that I was so sick that I needed some help.  I felt like I was dieing.  My doc put me on Plaquenil and I feel like a new woman.  Ask you pcp if this test absolutely rules out Lupus definitely or could this test vary from day to day.  The rash on your face really does look like a Lupus rash.  

You could do a search on the internet.  There is an article called "What I Need to Know About How Lupus is Diagnosed".  It has the 11 criteria for a Lupus dx.  A person is considered to have Lupus if they have at least 4 of the 11 criteria.

Blessings to you and your family,
Kara

[swatts831]

Thanks for the info! Another thing that my doc noticed last time I was there was that I constantly have a temp of 99.5* I think only once was my temp normal.

I read the article  that you suggested and I do have several of the symptoms: the arthritis, the malar rash, extreme fatigue, hair loss and Raynaud’s phenomenon. I also have this issue with my face being very red all over on occasion... I'm not sure why it happens but it looks like I've been out in the sun and my face is burnt and yet I haven't stepped foot outside. It did this on last Wednesday. Sometimes it will last a few hours, and sometimes it will last all day.

As far as the Plaquenil, it did seem to work a little at first then after a while it seemed to just quit working. I had all the same joint pains 10 fold. A friend of mine really thinks it's RA and it's just not presenting in the bloodwork...Could be. It does run in my family!

[karajo]

But as far as I know, the facial rash and Raynaud's is not a symptom of RA.  But they are symptoms of Lupus.  Do you have sores in your mouth or nose sometimes?  Are you still on the Plaquenil? And how long have you been taking it?  Just because you don't respond to the medicine, doesn't mean you don't have Lupus.  Has your dr. tried prednizone?  This certainly isn't something you would want to take very long because it can deteriorate your joints and bones over time.  But it could help with the dx process.

How many of the 11 symptoms did you have from that web site?

I get the rash too.  As a matter of fact mine flared up Wednesday too and I didn't go outside either.  It was the preview of a flare though.  I still have flares on the Plaquinel, but they are just not a severe.  

Praying for you,
Kara

[hava]

I would recommend you to try the holistic approach I suggested on August 28th 2008.
You will definitely benefit and notice something positive in days..

[swatts831]

I've never noticed any sores in/on my mouth or nose... I started the Plaquenil back in March of 08 and stopped in October 08. I am on Prednisone 10mg per day for now and it does seem to be helping. I have been hurting for the last 2 days though but I think it's because of the weather here... It's hot, humid and raining. It's been close to 80 here!!! Can you believe!!

Of the symptoms listed on the site, I had 4 plus the fatigue, hair loss and Raynaud's. My main ache spots are my shoulders, wrists, hips, knees, ankles, and toes. In the mornings I sound like a bowl of Rice Crispies!

[karajo]

I was sick for about a year before I got the mouth sores.  I'm not sure if lupus is a progressive disease or not.  I know some people it seems to attack with a fast vengence.  The last Rhemy I saw said I had a mile form of Lupus.  Although last Feb. I would not have consdered it mild.

I had a flare Friday after eating all those sugary things for Thanksgiving.  I am starting to wonder if sugar could also cause a flare.  Just wondering.  Cause I didn't see any sun Wed or Thur.  I know they say stress can can cause a flare, but I don't feel that I was under any stress either.

I would like to send you a symptom comparrison chart that I made up.  It compares the symptoms of Fibro, CFIDs, Lupus, Vit D deficiency and MS.  Go to my site on med help and send me a message giving me you e-mail address and I would be happy to send it in an attachment.  It's amazing how close all of these conditions are in symptoms.  

[swatts831]

Well for two days last week my face was red like  have been out in the sun, but there had been no sun, it snowed here!  My face actually looked like it was it was blistered! if it does it again I;m going to have to take a picture of it and post it on here so you can see for yourself! I don't get it! It's not just the mild rash over y nose and cheecks, it's the whole face!

[swatts831]

p.s.

and my eyes are extremely dry too... like I cant wear my contacts.... I've doubled up on my on flax seed oil and omega 3

[zmombomb]

Have the doc check for Sjogrens Syndrome!

[karajo]

I had the worse case of malar rash on a day when it was rainy and very cloudy.  In between rain, we took the kids to a park that didn't have any trees.  The next day was a terrible flare.  My only conclusion is the UV and UB rays go right through those clouds.  Especially on snow, they bounce right back up and you get a double dose.

[swatts831]

I have been checked for Sjogren's Syndrome and I do have that. It seems to flare whenever I have these episodic flares with my joints. When my joints get really bad is when my eyes will flare too.

Then this morning the tingling that I've been experiencing in my face has now lasted for 3 days and is now in my elbows and knees.

[postie]

Does your facial rash spare the nasal folds?

[zmombomb]

The symptoms of Sjogrens are very similar to Lupus.  My Rheumy said Sjogrens is a Lupus VARIANT.  So, that should explain many of your symptoms.  As for being outside in the snow with NO sun.... you can get that rash and the fatigue and joint aches from ANY UV rays, whither it's from the sun, lights in your home or office, and cloudy days, or tanning beds.  All UV rays will cause all that pain and other symptoms.  The Lupus foundation has a magazine called Lupus Now that has been an immense help to me.  More so than the Sjogrens site.  I truly think you have Lupus.  You may not get a positive diagnosis from the doc, but you really don't need it.  All you need is the knowledge that you KNOW what's happening with your body, and you are already being treated for Sjogren's, which is the same treatment as Lupus.  I am now on Plaquenil and Methotrexate, and will be starting Humira or Remicade in Feb. if the heat doesn't leave my joints (caused by Sjogrens).  Last night I was in so much pain I didn't think I was going to ever fall asleep.  I could barely move my arm or squeeze my fingers into a fist.  The Humira and Remicade are IV or Injections, and are supposed to be a TNF blocker.  We'll see.  But...those meds will CAUSE a malar rash on a person's face SOMETIMES.  Check your meds and see if you are on something that may cause it, otherwise, just tell yourself you have LUPUS, no matter what the doc says, and treat yourself accordingly.  LIKE A QUEEN!  Just be very good to yourself, stay out of all UV rays (wear a wide brimmed hat if possible) and put on lots of sun screen on any exposed skin.  That will help a lot.  Jane Iredale make up will also help.  That has a sun screen in it and the make up blends soooooo nice with all skin.  When I first rub it on, it looks like it won't cover a dang thing.  Then within seconds, I look awesome!  And it's a sun screen to boot!   Clothing actually allows UV rays in, so there are websites (lupus foundation has info on it) that sells clothing for Lupus patients that are sensitive to the sun.  And remember, UV rays go right through your hair!!!  Wear a hat at all times, even in an office or classroom or store!   Also check out the Sjogren's foundation and Lupus Foundation websites for more hints.  Take care....Remember, just say you DO have Lupus and go from there.  The written diagnosis just means you no longer qualify for new Life insurance policies or long term care policies.  So it's best not to have it in yor file.  If you already have Sjogrens in your diagnosis file, you don't want any more.  You'll not qualify for any long term care insurance or life insurance as you'll be considered a risk.  Trust me....I've been rejected by every company out there!

[karajo]

OK, Sjogren's is dry eyes, nose and mouth.  The rhemy did the little strips in my eyes for a test and said I was making tears.  Does this elimanate sjogren's?  My eyes stay red and irritated feeling all the time, but my mouth and nose seem moist.  I have been dx with  lupus and fibromyalgia.  

[swatts831]

Sjogren's is nothing fun! My eye doc was the one that made the dx. He did the strip test and I wasn't producing ANY tears. NONE! My mouth stays dry which often leads to bad teeth b/c there's not enough saliva to help break down the food. Then my nose pretty much stays dry, so if I sneeze I may break a blood vessel and end up with a small nose bleed.

zmombomb:

I was on the Plaquenil for 9 months and got no relief from it, I think my Rheumy had me on the wrong dose too though, I was only on 100mg. From my research, I should have started out at 400-600mg then dropped down to 200-300mg as the maintenance dose. Then the doc that I'm seeing now put me on Prednisone 10mg per day. It seemed to help a little but most of the joint pain is still there, especially in my hip, wrists, and fingers.

[postie]

You are very educated in all these symptoms.  I don't know if you had read mine where I posted them this week and karajo was the only one who replied but was a big help to me.

Did you see my symptoms and all that I had wrote?  If so do you have any clue what it might be?  My rash just doesn't spare the nasal folds is all but it has the wings that end at the end of the cheeks.

[swatts831]

Sorry but I dont see a post from you except: "Does your facial rash spare the nasal folds?" that you posted on 12/16.... I can tell you that when I get the rash, it goes over my nose and across both cheeks. But then there are days were my face looks like I've been out sun-bathing and my face looks burnt!

[postie]

I have the same exact rash where it goes over the nose and cheeks.  But it spares the nasal folds.  Is the rash continous right next to the cheek and nose or do you see a little separation about an inch betweent the nose and cheeks where they meet (the bottom of your nose).  The cheeks onmine look like wings and the end of the wings go to the end of the cheeks.  Then I also have a rash on my neck.  Mine has been there since 1998 when I got sick.  It never goes away but it gets worse if I'm in the sun.

[swatts831]

I think mine spares the nasal folds. Mine also will come for about 2-3 weeks then go away. It seems to come when I'm having a flare-up.

[swatts831]

Ok I take that back.... If you look at the pic at the begining of this post (yes that's a HORRIBLE pic of me), the rash does NOT spare the nasal folds..... Sorry about that...

[karajo]

Do you have a copy of your lab work.  All of them, from the beginning of when they thought you might have lupus?

If you don't have a copy of them, you need to request them.  They could even fax you a release form that you could fax back to them.  

What I would like to know is, what has been your ANA everytime they checked it?
And has any of the other autoimmune indicators been off?

Kara

[karajo]

also, check this web site out for pictures of malar rash.

http://www.cure4lupus.org/information/symptoms/skin/malar.htm

[swatts831]

No I don't have a copy of my ANA results... Geesh, that would go all the way back to 1997!!!!

[swatts831]

I looked at that website and the malar rash that I usually get usually looks like the first picture there... But I'm still baffled by the full facial redness (burnt look) that I get from time to time.... Next time it happens I'm going to take a picture of it for you and post on here...

[amber_cherie]

I have had Lupus for 10 years now. Unless your joints and fingers and toes are actually swollen, then you have R.A.

Now, is it Systemic Lupus? Where it effects an organ? My effected my kidneys and I had a transplant in April of '07.

I have been having symptoms of Fibromialga, but there are no tests they can do to prove it. It may be acting up because of the weather changes.

I am very knowledgable with Lupus, I've had it for 10 years and I'm on 24, I got it because I broke my ankle, and they put a metal rod in it and my body rejected it.

So any questions, feel free to ask.

[ohiolynn]

My mom was diagnosed with systemic lupus 22 yrs ago. She is now 70 and I thank god for every day shes here. It took 5/ 6 years to finally diagnose it. She went for an EEG at one of the hospitals on one  Friday,she was planning on leaving to visit my sister out of state, when the hospital called and told her to get to the hospital right away. She had water around her heart. They did open heart surgery to remove the water and to make a window for the water to drain. They tested the fluid and this is how they dignosised her lupus. They told her she would proably live another 5 yrs., but with research,new medications and a will to live my mother is still here. She has a long list of medications,diagnosisies and doctors. She had the butterfly rash, rashes on her arms, skin cancer on her face  iplural ifffusssion,sezuires,tiredness,congestifed heart failure, depression, uses oxygen, arthitits, ostoperosis and many other things. Of course also a weak immune system. She takes her medications as she is suppose to and sees her doctors on a regular basis. It is very important to keep records of all your medications old and new. Keep track of your diagnosises and hospitalizations. If you change to a different Dr. keep track  of that too. Between my mother's children and grandchildren this a lot of what has kept her going. She just celebrated her 70th birthday in Nov and is expecting news on her first great grandchild. I also have a cousin on my fathers side who is four years younger than my mother and was diagnosed with lupus also. She suffers badly from RA also. I don't know as much about her lupus other then she has problems with her kidneys. I am my mothers oldest daughter and I tested positive for Ra factor which I quess you could say its like the carrier but its not affecting my joints other then there is pain. Yes, I do see a  rheumatologist and yes they have ran all kinds of tests for Lupus and autoimmune diseases. No signs of Lupus but I don;t know that I comfortable with that.

[ohiolynn]

Be careful with predisone it will blow you up like a balloon and put weight on you like nobody's bussiness. My mom put on about 80 lbs and it not do anything but hinder especially in getting around. Since coming off of the predisone which she had been on for several years she has lost the weight. It has help tremendously. People talking about skin rashes and all. My mother kept having this rash like stuff on her arm so they did a biopsies of because of the cancer. It came back negative but they told her she now also has what they call discloid lupus which deals with the skin. So now she has systemic lupus ans discloid lupus and both are flared. Rhemy put her on predisone long enough to get things balanced out. We don't want her to gain the weight back. It was causing her to fall a lot. Bless all of you and hope this info can give someone a little more insight into this confusing disease. Sorry for the spelling

[karajo]

Hi Amber,
This is an interesting concept.  I've never thought about your body refecting something causing lupus.  All of my symptoms began when I had gallbladder surgery.  They put a few clips of some sort to clip off the duct soming from the liver and another one that the gallbladder spilled into the duodeum.  Could it be that I'm just having a reaction to the clips?  

Did they remove the metal rod?  How did they figure out you were allergic?

[swatts831]

Yes I don't necessarily like the Prednisone because of all the side effects, and with long term use it can cause lung damage. But it helps with the flare-ups and all the joint pain. There are days were the joints in my hands, hips, knees and ankles feel like they are on fire but there is barely any swelling and no redness. I seem to have a lot of changes with the weather, like when it's going to rain, and when it gets cold. And when I have the flare-ups I get the REALLY dry eyes. But the face thing happens sporadically.

[postie]

I have all my labs back from 1998 when I got sick.  

[hollywood54]

Don't give up hope!  I've had and still have almost all of your symptoms.  They first began about 7 years ago.  I'm now (in one week) 55 and sometimes feel like 85.  Just to be short let me list my symptoms.

-Arthritis, severe (rhum & osteo) the crippling kind
-Migraine's
-Excessive fatigue
-Degenerative bone disease (lost 3 in my neck)
-Bone mass loss
-Every bone in my body has been diagnosed with arthritis
-Severe Fibromyalgia (spelling?) which I've had for 12 years
-Vision blurring
-Dizzy Spells
-Skin Rashes
-Anemia
-Body twitches
-On and ON and ON....

It is a difficult thing to deal with.  I was diagnosed with Lupus 6 years ago.  With the help of the Lupus Foundation they put me in contact with a very good Rhuemitoid (sorry about spelling) doctor.  YOU HAVE TO HAVE A GOOD ONE WHO KNOWS WHAT THEY ARE LOOKING FOR AND NOT GUESSING!!!

My first symptoms were loss of balance, severe migraines 2 to 3 times a week, depression, etc.  Note:  For me taking anti-depressants were no good!.  They made me suicidal.  Anyway also without warning in the middle of the night I would wake up with a headache so bad I could swear someone put an axe in my forehead.  Then without any more warning, projectile vomiting.  This happened about 4 times and before calling an priest for an excercisim I went and had my hearing tested thinking it was an inner-ear infection.  After determining I had 30% hearing loss, which didn't mean anything other than I was partially deaf, I was referred to a neurologist.  She did a cat scan and said she couldn't find anything and I said I know but is there anything wrong?  She did a few more tests and she literally could push me over with 2 fingers.  She told me to try to resist her alternating pushing on one shoulder then the next.  I could almost be pushed over.  She asked me if I was resisting and I said yes and for her to stop cause she was "pissing me off" (sorry).  She said that I needed to go see a Rheum. Dr. because I also had nodules coming up on my feet and other bone areas.

Short story long, I went to a Dr. in Hollywood across from Cedar Sianide (you know the famous one).  I don't remember his name but he ran tests and then determined my lupus situation.

Prognosis:
Medications, exercise, diet. My lupus is the one that can kill ya I guess, but don't be scared.  When you learn to understand this thing you can deal with it and pretty much beat it.  It has attacked my liver, heart, lungs, bladder so far.  But I've always been a fast healer and my pain endurance is at a high level.\

Because at this time in my life I am basically homeless (living at parents) jobless, penniless, hopeless....I can't afford medication or medical attention.  BUT my advice to you is to don't question every little symptom or red rash or pain or ache.  Some could be independent.  After having a baby also, some of the symptoms that you mentioned are also related to post maternal.  Please don't give in to "self analysis".  Yes you do have a lot of symptoms and not to be discounted either.  Address each thing individually and start what they are famous in saying "ruling out".  But mainly and most importantly, get a good Dr.  Call the Lupus Foundation and talk to them they are wonderful people and can help a lot.

I hope the best for you.  For me.....HA!  

Whe

[swatts831]

Thanks for your post! It was comical yet informative! Yesterday was a REALLY bad day for me. I work up and could barely walk. My knees hurt so bad! Along with my ankles, shoulders, wrists, fingers, and hips. They were all inflamed but no redness. A friend of mine has told me for the longest time that she thinks that I have Rheumatoid Arthritis. I think this is a great possibility since it does run in my family. The problem that I've been running into, is getting a doctor to believe me since it's not showing up in the blood work except for in the SED rate and the CRP. My PCP is the only one that seems to believe me and says that he knows there is something going on and he very well believes that it could be RA or Lupus and just not be presenting in the blood. It's just really ridiculous when you're 32 (going on 33) and each time you go to use the restroom, you hear you entire back pop and knees crunch! And that's just the beginning.

I was thinking the other day, that I was going to start a list, a diary of sorts, of all the symptoms that I've experienced and am experiencing since day one! All the way back from 1996. My Godfather, who's a doctor, said that he's going to try and get me an appointment at Tulane in New Orleans. All the doctors, and hospitals around here that take Medicaid don't have any appointments until at LEAST October of 2009! So hopefully when  get into Tulane, I will have this list to give the doctor and tell him "Here YOU figure it out cause no one else can! And don't DARE tell me I'm depressed!" I had one doctor tell me that it was all depression and put me on Cymbalta. I will NEVER use that medication AGAIN! I could NOT function on that stuff! I was like a walking drunken zombie! I told the prescribing doctor about the problems I was having on it and yet she insisted I stay on it! Then I started having severe night sweats! Still she insisted I stay on it. So I got another opinion and was immediately taken off the medication. As far as I'm concerned, that medication should be taken off the market!

Anyway, back to the subject..... My daughter informed me last night that  I was "flying away" as she calls it, when I get the butterfly rash on my face. So is it possible to have Lupus along with RA? I certainly have the symptoms of BOTH.

Good luck to everyone and HAPPY NEW YEAR!!!!!!

[swatts831]

P.S.  

Even my jaw hurt yesterday! When I have really bad flare-ups like that, my jaw also gets inflamed too, and all I can eat is protein shakes and Smoothy King drinks.

[jesmicole]

I had a lot of the same symptoms and after a year of no diagnosis, they finally figured out it was Lupus. The doctor biopsied a rash I had on my arm and that's how they knew. I found out a lot of people are diagnosed this way. Hope this helps

[Lsuarez777]

Hello, I am new to this forum and I have been reading most of your messages.  I can simpathize with you.  My testing was also a great roller coaster ride.  I tested positive on an Double Stranded DNA test when I was about 23 yrs. old.  I was having low grade fevers and joint pains.  It then all disappeared and suddenly at the age of 41 everything hit me with all its might.  The pain on my joints was unbearable. The testing seemed unending and finally the end result by my Rheumotoligist was that I have Lupus and Sjrogens.  This is so hard to deal with.  My reason for posting is to let you know that from my experiences the Maylar rash doesn't necessarily come from direct sunlight only.  The flourescent lights cause flare ups as well.  I recently had the worse of all flare ups and my face felt like it was burning up.  I did some research and found out that the flourescent lights are our enemies.  My husband has changed all of our light back to the traditional bulb and I wear make up with an SPF of 15+ to work since I can't ask them to change the lights.  It has helped with the rash.  This rash is a big low self esteem cause and that in itself sets us into the depressed mode that in turn gives us another boost of flare up.  It's a vicious cycle and we have to try to get a grip ( control) on the triggers.  I too am on Plaquenil for the past 9 months.  The first six months it was helping somewhat along with 5mg of Prednisone.  However, the pain is back full force and I am ready to let my doctor know on the 13th of this month.  Don't give up because there must be something out there to help relieve our pains.

[swatts831]

Well  I FINALLY found a Rheumatologist that has an appointment earlier than OCTOBER of this year!!!!! He's at Tulane in New Orleans... His first available is Feb, 10. So I called my PCP to send over the referral. This last week has been a rough one for me with all this rain and hot weather we're having. Yes I said HOT. One day it was 83 degreese here! We went from snow to HOT in less than a week! Did I mention that I hate Louisiana? The day after New Year's I had a really bad flare up. I haven't felt that bad in years! Everything from my shoulders down hurt! I was swollen and it hurt to even stand up, much less walk. So most of that day was spent in bed. Today is not so good too. My jaw is swollen and I can't eat anything so Smoothie King was on the menu for dinner. 45g of Protein, less than 1 carb, and less than 100 cals! Can't beat that!

[Lsuarez777]

Hello, I am so sorry to hear that you are going through so much pain.  However, it seems that there may be some light at the end of the tunnel for you.  I hope this Rheumatologist can get the answers you need and help eliviate the pain you are experiencing.  I've been reading your postings and wow! I can see why you are so upset but please try to keep calm because stress will only make you flare up more.  It sounds to me like you do have Lupus and while it is a life ending disease in the very far away future you are more likely to die of something else.  It is more of a painful lifestyle if anything.  Managing the pain is the key to having a somewhat normal life.  Please keep us posted and know that you are not alone out there. God Bless and best wishes

[swatts831]

Well i finally got the new Rheumatologist appointment! It's set for Friday Feb. 13 at 3pm at Tulane!!!!!! I sat down the other day and began to write down ALL of my symptoms, starting from the head all the way down to my toes. Took me a whole page so far!

This week has been a roller coaster with pain. Mainly because of the weather here. Yesterday it was almost 80 degrees AGAIN, and then today the high is only 54! The weather here is so sporadic my  body never knows what to expect. I've been dealing with the shoulder, hip, wrists, finger, knee, and ankle pain. And not to mention the jaw pain. My jaw decided to go and swell up on me too this time around. So I've been eating Smoothie King, Protein shakes, eggs and anything soft. I lost 5 lbs in the process this week! I think the hardest thing I ate was lettuce. I may stick to this diet for a little while longer and see if I lose any more :)

[Lsuarez777]

I can truly understand your frustration.  Hang in there because Feb. 13 will be here sooner than you'll know.  I hope they can get you on the right track.  I am still not on the right path myself.  I am currently taking Plaquenil for Lupus but the doctor says I test positive for Sjrogens too.  I get flare ups but not that bad because of the plaquenil.  After they are done with my renal exams they can adjust the meds accordingly.  It's a batte but you are not alone.  The most important thing is to educate yourself and the loved ones around you so they can understand your pain and mood swings.  I will check in at least once a week for your updates... God Bless and feel better.

[swatts831]

Thanks for your comments and help... The more I look into my symptoms it looks like I have Sjogren's and RA. A good friend of mine has RA and was diagnosed at age 28 and it took her about 8 years to get the final diagnosis. Doctors also diagnosed her with Lupus too before making the RA diagnosis. She has been saying for years that she thinks I have it. After doing much research on the internet, I think she's right. All the joint pains that I have is associated with RA and it's symmetrical, But the facial rash and redness baffles me. It doesn't get worse when I go out in the sun and I'm already kinda dark due to my heritage (Native American and Portuguese). My complexion is kinda orange I guess (at least to me it looks like that). My daughter says I have a yellow complexion. Who knows..... But I have my list of symptoms ready for the doctor and I'm ready to hear what he has to say!!!!

[karajo]

Is the yellow color something new, or is that your normal skin tone?

I have a friend who has RA.  Her face was turning red, with a rashy look to it.  I told her I was concerned about the rash on her face.  As it turned out, her BP was extremely elevated.  So please at least go to Wal-Mart and get your BP checked.

[swatts831]

Nah, the yellow-ish skin tone is nothing new... I've always kinda been this color... It's like an Asian color but a little more brown I guess... And another thing that I've ALWAYS thought that was really strange, was that you can see all the veins on my chest and my forearms. I was doing a medical questionare the other day and it made reference to the veins on the chest. I didn't know there was such a thing as that! I just thought it was me and that the skin on my chest was thin or something.

[swatts831]

Ok new symptom..... My joints are now turning red! The joints in my hands and wrists (which have been in some serious pain for the last month or so) are now starting to turn red. There is some puffiness too. My right hand and wrist has been pretty swollen for the last several weeks.... My friend Robin that has had RA for the last 16 years, is completely convinced now that I have RA.

[karajo]

Just so you know, lupus can and does cause joints to turn red and swell.  That's one of the 11 criteria.  Although lupus does not cause the joint deterioration that RA does.  Just because your ANA was low does not mean you don't have lupus.  You have a very high CRP and Sed Rate.  Which could indicate either RA or lupus.  I would think RA would be better than lupus because lupus can involve organs.  But I know of RA patients who are very crippled.  

Keep us posted.  I know you have a dr. apt. coming up soon.

[swatts831]

Yes I do have a doc appt coming up and believe you me! I'm counting down the days!!! This crazy weather we've been having has been taking a number on me... One day it's hot and humid and the next day it's cold! Yesterday I was ok... Today I'm sore all over! And my big toe on my left foot feels like it needs to pop but it wont.

[swatts831]

Well after the fiasco at the Rheumatologist office this past Friday the verdict is in! It's not Lupus.... Seems as though it IS Rheumatoid Arthritis. He said the facial rash is not a malar rash because it's not the red raised rash. The joint pain and swelling that I am having is all RA, along with the bowl changes that I've been experiencing too. (yes yucky I know, sorry). So he wanted to run some blood tests to make sure that there was nothing else wrong, then next month when I go back, he's going to start me on Methotrexate. He did call me back shortly after and tell me that my Potassium was quite low. Said it was 2.7 and it should have been >4.0. So he told me what t do for that. So guess i have to move over to the Arthritis community now ha? Well it's been a pleasure with everyone here!!!!!

[karajo]

Thanks for letting us know.

We are praying for you.

Kara

[mschvusangel]

I have been reading this thread and was hoping some of you could look at the pictures in my profile and tell me if you think the rash on my face looks anything like the Lupus rash. I have had it for quite some time now along with lots of other symptoms along the way.  The rash never completely goes away, some days it is really bad, and some days it is hardly noticeable.  Most of the time my face just looks flushed, but here lately it has been looking almost blistered, and it will get really dry and scaly.

I have several posts in other communities that you can look back through if you wish to read all of my health problems.  I have many symptoms that mimic several different disease processes, but through tons of reading and research, I have started to think that it may be Lupus.  I have long thought that some of my problems may be some sort of autoimmune disorder, but didn't really know what it could be.  

For one, I have a vitamin D deficiency that I have been dx with for several years, and Vit. D deficiency is a major risk factor for developing an autoimmune disorder.

My SED rate and CRP levels are always elevated.  My Dr has ran the ANA's before, but they have always been negative.

I have Intracranial Hypertension, and I have found that lots of people that have this disorder also have Lupus.

I gained over 60 pounds when all of my health problems started and don't know why.

I have sensory problems too.  I have been checked for MS and that's not it either.

I am always tired no matter how much sleep I get and I always feel bad.  I just wish they could find something wrong with me, so I can start treatment and one day start to feel better.

I'm sure I have left out lots of details, and I know this is a bit sketchy and disorganized, but you can go back and read some of my other posts if you like to get a better Idea of my issues.

thanks for reading!

[swatts831]

Are you on any diuretics by chance? Reason I ask is because I have been on HZTZ for some years now for fluid retention and have many of the same symptoms you have. Last Friday my rheumy did a whole slew of blood work and found that my potassium was really low. Normal was >4.0 and mine was 2.4. If you look up the symptoms of low potassium, it explains a lot of the symptoms that mimic lupus. Is really upsets me that I've been on a diuretic for so long and NONE of my previous doctors ever questioned why I was not on a potassium supplement while on HZTZ!

[apriljjohnston]

I am 18 years old and show 8 out of the top 10 symptoms. I've been dealing with the butterfly rash for about three years now. In the past, doctors have tried to tell me that it was many things such as staph and other skin problems. Awhile back, I had a chest xray done, and they said I had an enlarged heart (I was also having a flare at this time of the butterfly rash and severe pain.) When I finally got in to do an echo-cardiogram, my heart was back to it's normal size. I'm wondering if my heart was enlarged because of the flare, and by the time I got in for the test, I was no longer flaring, so it showed normal.
Here I am, a couple of years later and I've already been tested for Lupus four time but the ANA just keeps showing up negative. I literally fell at work yesterday because I just couldn't take that next step forward due to so much pain. My whole body aches--everything hurts. My job has cut my down to part-time because I cannot even handle it. I sit in a chair all day and do therapy on Chiropractic patients.
I always have headache and I always hurt everywhere. I can take the trash put and then will have to sit down for like 20 minutes because I'm so worn out from just doing that.
I think I've had 12 ER visits just in the last six months. The first words out of the doctors mouths always seems to be, "Have you been tested for Lupus before?" I say yes, and then they test me...and I have everything except for the blood word dangling in their faces...
My Rheumatologist diagnosed me with Fibromyalgia and put me on Cymbalta, but it's not working. I still hurt ALL THE TIME. I wish they would just treat me for Lupus and see if works. Im thinking about getting another Rheumatologist to see if that one would just think its Fibro...I'm tired of being in this much pain. It's not the life I want at 18 years old. This has all gotten me so depressed...I just don't know what to do anymore or were to turn...

[karajo]

Hi April and welcome to medhelp.

If you had lupus, I would certainly think the ANA would be positive by now.  Even people w/ neg. ANA lupus eventually have a positive ANA.  I know spending time in the sun prior to testing made a huge difference in the outcome.  How many of the 11 lupus criteria do you have?

Have they tested for lymes or rocky mountain spotted fever?   That would certainly be something I would recommend.  

[karajo]

A few more things I forgot.  It would be good to get your vit D level checked, ccp antibody and Rheumatoid Factor.

[hava]

I would recommend you to try the holistic approach I suggested on August 28th 2008 on this thread.It does not cost you, and no side effects.
You will definitely benefit and notice something positive in days..

[karyn1976]

I had been having most of the symptoms as everyone above. I have a clothes dryer in the house and been using it for many years. Often with the house closed up. I have just discovered that this can cause carbon monoxide poisoning - low level exposure over a long time. Please see below:


Dr. David G. Penney has conducted one such study. He suggests that long periods of exposure to carbon monoxide, even at low levels, can result in long-term effects. He calls this chronic carbon monoxide poisoning. This can cause effects in an individual for days, weeks, months, or even years. Results vary depending on the age and health of an individual.

For the purposes of Dr. Penney’s study, the term “chronic” is used to describe how long the carbon monoxide exposure lasts, not how long the resulting effects are.

Physical symptoms: headache, nausea, vomiting, muscle pain, joint pain, chronic fatigue, dizziness, numbness, tingling, vertigo
Cognitive / Memory Impairments: attention problems, multi-tasking problems, word-finding problems, short-term memory problems, verbal and/or visual deficits.
Affective Disorders (emotional/personality effects): irritability, anxiety, lack of motivation, temper, loss of interest, sleep disturbance.
Sensory and Motor Disorders: blurry vision, double vision, buzzing in the ears, decreased co-ordination, speaking, eating and swallowing disorders.

[jessmj]

Hello,
I have been going through the exact same things as you have just described.

The doctors haven't got a clue what is wrong with me, and it feels like they have given up on me. I get pain in my shoulders, neck, upper and lower back, hips, wrists, fingers, jaw, knee's, ankles, feet and toes. Some days some are worse than others, but some day's all of these will flare up together and it just feels like it's my body's way of telling me that I'm useless. I get really bad migraines, and am tired 24/7. I can get home from work, fall asleep straight away, and wake up still tired, I can get 8 hours sleep, and still be tired. I have no problems getting to sleep, however once I am asleep, I wake up on average four-five times a night. The doctors have put the migraines and sleep problems down to anxiety and depression, I generally feel so low about myself, not being able to do the things that normal 18 year old girls do, I am constantly paranoid and I worry about everything. I need answers; I can’t live my life not knowing what is wrong with me. I don’t want to be in pain any more, I want to be able to go out clubbing and wear high heels, but I can’t even manage half a day shopping.